Initial symptoms of MDS

[chris]

Hi there

Oh gosh.I’ve just seen a terrible typo in my post ! I was diagnosed 15 years ago. Not 25! Sorry to mislead.I’ve got new glasses following a cataract op and they seem to be making everything a bit blurry and me a bit whoozy!

The most difficult situation to manage is that most infections can be transmitted from 2 days BEFORE anybody shows any symptoms to 5-7 days after the symptoms begin. So somebody could “innocently” pass something on. Hence we haven’t been indoors for over 3 years other than with close family and, for special events like Christmas, we shall ask everybody, including the grandchildren, to have a lateral flow test before meeting up.

A close friend had a birthday tea this February ( which we declined!) at which nobody showed any symptoms but within 1-2 days, 6 people had Covid and one was hospitalised for a week and on oxygen!

Hope you can manage your current immunity concerns in a way that you feel comfortable.

All best wishes

Chris

[NDTA10]

I'll happily take 15 years Chris. I'm 71 although pretty fit and normally active but fatigue set in in the last few months.

[NDTA10]

I'm surprised at how few people interact on this forum in comparison to the Blood Cancer one. There are so few of us with MDS I thought it would have been more active which is a great pity considering how many new members joined just in anuary.

[NDTA10]

January

[chris]

Hi there

You're right there is a huge disparity between posts. I think maybe, due to the size of the organisation, Blood Cancer UK comes up first in Google searches and many people will just stick with their Forum and not even find MDS UK? Because BCUK deals with all the different types of leukaemia, (there are 40,000 new cases of blood cancers each year as opposed to 2,500 for MDS and CMML), it also means they get more funding and can afford more resources than MDS UK. Their income is around £12.5 million and ours is around £180,000! It also means they have more staff and volunteers to respond on their Forum whereas on here it's usually only me and one or two other patients!! There is a lovely lady called Erica om their Forum and I cannot believe she ever sleeps, given how many responses she makes to posts! We do, however, have an active closed (private) Facebook group of around 900 members who all have MDS or CMML. Maybe that would be an option for you? (Personally, I am a social media refusenik - not for technical knowhow reasons but I once grudgingly joined a FB closed group for my choir during Covid and was staggered at how many of my contacts immediately came up to "friend/like"- despite me ticking all the privacy boxes I could find! How do they know all this stuff?!) If you did want to join though, here is the link
https://www.facebook.com/groups/1961821 ... 5287687778

However, one area where I think we offer a great service to our members is in the patient support meetings. You know that everybody in those meetings will have the same disease and issues as you so you can relate to them better than with people who have a range of other blood cancers. As it happens, we have a meeting tomorrow morning 15th January, specifically for recently-diagnosed people. This is a new type of meeting and would welcome you there so we can share the resources we have to support you. Please click on this link to register and join. I will be co-hosting and it would be lovely to meet you.

https://mdspatientsupport.org.uk/event/ ... bers-only/

With all best wishes

Chris

[NDTA10]

Hi Chris thanks for your reply. If I had thought about it more I would have sent my Christmas card money to MDS not BCUK. Never mind perhaps this coming one. I would love to join in the meeting but I have a blood test for my next appointment tomorrow morning. Please let me know when the next one is. Kind regards Norma

[NDTA10]

Further I'm also not a face book fan. I tried to join and they wanted me to wait three months during this time I went off the whole idea which is really why I did the earlier post hoping some one might have some helpful info etc. And then I met you Chris.

[chris]

Hi Norma

Oh that’s a shame as I thought tomorrow’s meeting would be so useful to you. The patient meetings are here on the website and you will get invitations by email. Did you not get the invitation and reminder that came this week? Have you checked your junk as our address might not be recognised if it’s new?

https://mdspatientsupport.org.uk/events ... splay=list

The next meeting is specifically about Azacitidine so may not be appropriate for you -unless you’ve been told it’s a potential future treatment? But we’re planning another 4 support meetings in February and March so hopefully you’ll be able to make one of those.

We have just created a useful resource list for newly-diagnosed patients and I’ll post the link on here once it’s up on our website -early next week.

Hope blood test and your next appointment go ok.

Best wishes

Chris

[NDTA10]

Thanks Chris I'll keep a lookout for them. Norma

[NDTA10]

Hi Chris I've looked but no spams. I'm on week 7 of EPO injections so checking on Weds that they are working - which I think they are as I'm not dizzy or so fatigued as I was. Fingers crossed that they are. Norma